Belle Update: June 29

Belle had a great day. 

The room was a busy one, with 3 new admissions since yesterday. Needless to say, there was a lot happening around us. A lot of new and nervous faces. 

It's a painfully scary, yet beautiful world here. I really feel for some of the other parents in the NICU. It breaks my heart sometimes. Their pain often makes me forget about our struggles.

Everyone's story is different, and they say you shouldn't compare, but when I see some of the things that happen around us, I start to realize just how great we have it. 

Arabella's going to be okay. She'll get through all of this eventually. 

We'll get through all of this...eventually...

Look how awesome she looks. You would never guess by looking at her that she's going through so much. 

Today she came off the antibiotics, and off the IV. A second round of blood cultures came back negative this afternoon, so there's nothing to worry about. 

The staff increased her diuretics doses today, so she was able to breathe a little easier by the end of the night. She's already looking less puffy to me, too.

She had a lot of wonderful and alert moments. 

Looking at us and interacting with us. 

Later into the night we gave her a warm bath and dried her immediately. 

We placed her in a fresh new onesie and we stayed with her until she fell asleep. Sometimes it takes her a while. Belle always wants one of us to hold her soother, too. 

In the last month or so, Arabella's been sleeping very well during the night. She'll usually wake up a few times, but only for brief periods. 

She's getting to be such a big girl, it's incredible. Today was just an awesome day. 

Belle Update: June 28

She started the day on 'high flow', but by mid-afternoon she was back on the CPAP mask. 

The mask is her best friend. 

She gave it her best shot on the high flow, and that's all we can ask. Arabella was just working too hard. Her poor lungs can't sustain that amount of work.

She needs a certain amount of pressure to keep her lungs open constantly. It lightens her workload, and the CPAP mask does that. 

Her lungs have a long way to go, but it's not a fair game from Belle's perspective. She has side-effects working against her, like moisture in her lungs, and it's all because of this sugar drug, Diazoxide.

You can tell that she looks puffy in today's pictures. A few weeks ago I mentioned that we'd see her swell again, and now it's quite obvious. 

She's on so many drugs right now, and I despise them all. I feel bad for her and I worry. 

I see how everything affects her. 

They've started to wean her Diazoxide dose, at least. Arabella's sugars have been quite good this week, and hopefully they stay in a good range, otherwise we'll never get rid of this drug.

There are so many things going on with Arabella, and we still have a long road ahead of us. Instead of getting frustrated, we simply need to get comfortable. 

We're in it for the long haul.

Today was another busy day filled with x-rays, glucometer pokes, blood samples, IV line switches, respiratory changes...and of course cuddles with mom and dad. 

Bella loves her cuddles, and we love them too. 

Belle Update: June 27

A few surprises for us today. 

One: We came in to find Arabella off the mask. Two: It turns out that she does have an infection. Three: They've started giving her drugs for her reflux.

It felt great to run my fingers through her hair.

The high-flow cannula is similar to the mask, but it doesn't have a set pressure. It's mostly oxygen.

We've noticed that it makes Belle breathe a little faster. Hopefully she can tolerate it for as long as possible, since it's a nice break from the mask and it gives her more freedom.

The blood cultures showed that she really does have an infection brewing, so antibiotics will need to continue for 5 more days through an IV. 

Her IV line blew this evening, of course, so she had to be poked a few more times until they found another good vein.

There's always something going on.

Arabella reacts negatively to certain sounds that she hears. Some of those sounds are a signal that something bad is about to happen, like the sound of plastic rustling or tape ripping. 

Now that she's older, she's more aware and responsive to everything around her. 

There isn't a baby in the NICU that likes to get their nose or mouth suctioned. Every nurse apologizes to Arabella profusely. 

Helping hands. 

Sometimes it takes a few people to get through a procedure, but accessing a tiny vein is a magicians job.

The final result, a solid IV line sitting in her foot.

Another busy day.

The staff started giving Belle drugs for her reflux, and it's really concerning. The drugs don't always work, and obviously they come with downsides. We don't know what to think at this point. 

We're all just so very tired lately.

Parents' sacrifice

Arabella's fever went away this morning, but she's still on antibiotics in case there's an infection. So far the x-rays and blood work haven't shown us anything to worry about.

She looked like her regular self to us, so hopefully last night was just a false alarm. 

We cuddled her for hours and hours at a time, and she slept really well in our arms. Poor girl was so tired, but she still found time to be playful with mom and dad. 

I think we're all exhausted. 

When you're tired, it makes tough days even tougher. We need more strength and energy to deal with the daily ups and downs, but sleep isn't always easy to come by. 

It feels like there are a million chores waiting for us at home. Things still need to get done around the house so you end up cutting into your sleep. On other nights (when you actually want to go to bed early) you might lay there for hours, looking up at the ceiling in wonder...

Thinking. Praying. Anything but sleeping...

Some days we overdo it, and it's 100% our fault. We simply can't help ourselves. We stay too late or too long because we don't feel good leaving until Arabella's asleep. 

Sometimes we stay late because she's going through a procedure, or because she's unwell and we want to support her. 

Tonight we soothed her while the nurses inserted a new IV line for her antibiotic. They blew a vein in both of her legs before finding a good vein in her arm. 

Arms outstretched, Belle was certainly done for the night. 

For a little girl, she goes through a lot sometimes. There's always something bringing her pain or discomfort. She's constantly challenged by the staff too, so it never really ends for her. As parents, we naturally want to be there to help her through all of this. 

What parent out there hasn't lost sleep because their little one had a bad cold or a fever during the night? We're like every parent out there, doing the exact same thing.

Dreaded phone calls

We just received a phone call from the hospital. It's 2:45am and we were told that Arabella has a fever. We were only home for 3 hours, and Belle seemed reasonably fine to us when we were leaving.

A fever could be minor, but it could also mean the start of an infection. Bring on the chest x-rays, antibiotics, blood work, and all of the other precautionary measures. 

Thankfully, one of Arabella's core nurses is looking after her tonight. She knows all of Belle's tendencies, and that's always reassuring at a time like this.

Oddly enough, I was talking about these "dreaded phone calls" with another NICU parent today. To this day, we all feel uneasy anytime we hear the phone ring. Something happens to us, and we tense up. 

The call is always a form of bad news. And right on cue, here was that familiar call...

We've been through this before, but it doesn't make things easier. 

Today brought a lot of anxiety even before the phone call. We witnessed a baby in our room go into cardiac arrest. They call it 'Code Blue', and it was pandemonium. 

The staff were yelling, the baby's parents were crying, and we couldn't help but cry as well. I was holding Belle in my arms at the time, and it was crushing to witness. Eventually, the baby was resuscitated, but it was madness in that room for what felt like eternity. 

This wasn't the first time we've witnessed something like this. We've pretty much seen it all by now. 

We'll see what tomorrow brings...

Belle Update: June 24

Belle has some funny looks. She's there to make sure that we don't take things too seriously.

Laugh. Have fun. Enjoy. 

She's a constant reminder.

She's getting puffy again, but it's been a very slow process. Do you guys notice it? It's so subtle, but it's definitely happening. We've seen this from her before, and it's 100% the sugar medication.

A parent just knows something is going on...

Arabella is getting a few different diuretics to help minimize her water retention, but they can't always keep up. She needs the strong stuff (called Lasix). 

Unfortunately, Arabella can't take too much of the strong stuff. It would eliminate most of her vitamins and minerals, and her bones depend on those vitamins, so it's a game of balance.

Kiera and I are watching her closely, as is everyone else. 

Today her feeds went to 45 minutes (from an hour) and her sugars have still been stable. We noticed she had more reflux issues, though. A shorter feed makes it a bit harder for her to handle, but she does the best she can.

It would be great to wean her from this sugar drug eventually. She's got enough going on, right? But everything will sort itself out.

Belle was lounging most of the day. Hands were up and feet were crossed, like a real boss 😎

She's had a lot more naps over the last few days, and that's always a pleasant sight. We want her resting and growing as much as possible. 

It's nice watching her sleep. It brings a smile to my face. 

Video: A day with the chin strap

This clip was taken on June 12. Belle had her chin strap on for most of the day, which kept her mouth closed and prevented the mask pressures from escaping.

She's really alert and observant!

Belle Update: June 23

Her outfit today says, "Beautiful in every way" 💗

Arabella's doing well on her hour-long feeds. She eats every 3 hours, so she has a 2 hour gap between meals. We want her sugars to be stable during those 2 hours, and so far they've been okay. 

We'll see how things continue. 

Today she was up to 54ml of breast milk. They've been putting a lot of extra fortifiers and calories into her feeds lately. On top of her milk, she'll regularly get a cocktail of meds, and all of those liquids can add up to one very large belly. 

Eventually, the staff will attempt to put her on 30 minute-long feeds to see how her sugars react over a 2.5 hour gap. If her sugars are within a good range, they might be able to decrease her Diazoxide dose, and hopefully wean her from it slowly.

I swear, all these drugs are a pain. 

I'm staring to see Arabella get puffy again. It's very subtle but I've noticed it around her face. One of the many side-effects of Diazoxide is water retention. Excessive water is being stored in her body, and it actually causes her heart to work a lot harder. This is one of the main areas to watch and monitor while she's on this drug.

Another side-effect of Diazoxide is increased fine hair growth around the body. Yes, you read that right. Increased hair growth. All over the body. 

So not only can Diazoxide impact your child's heart and lungs, but as an added bonus they might eventually resemble Chewbacca. Awesome.

It's a temporary side-effect, at least. Hair growth is nothing to worry about, obviously. The extra hair will only last while she's on the drug, and hopefully she won't turn into too much of a hairball 😄

Sometimes you just have to laugh it all off...

After coming home we watched some of Arabella's old videos. We're shocked every time we watch those old clips of her in the incubator. They're wonderful reminders and memories. 

She was so tiny! She's really come such a long way...

What a blast from the past. 

Belle Update: June 22

Babies are so pure. They're so authentic. 

They represent all that is good, honest, and true. There is nothing disingenuous about them, and it's refreshing.

They really bring out the best in us.  

I've been missing this kind of authenticity in my life. Arabella calls me to be more honest, thoughtful and compassionate. She's a call to give back, and get over myself.

I guess you can say it's been a growing experience for all of us. 

I've learned that it's okay to let your guard down and be vulnerable. It's okay to love wholeheartedly, be sensitive or overly-concerned. It's okay to want to give yourself to the point of exhaustion. 

We've all done not-so-normal things in the name of love, friends, or family. 

It's about being there for one another. 

Today we had a lot of sweet cuddles with Arabella. We really enjoyed our time with her. She was so alert and playful at times.

We had to replace her old hat today, but before putting on her new one we got to marvel at the big girl looking back at us. 

Belle can only handle a short time without her mask, so we made sure to snap the quickest picture. She looked so different to us, but it was exciting to see her nose, cheeks, and all of her dark hair.

I love looking at her beautiful eyelashes, too.

She's such a light in our world. She inspires us to be better and to do better, and I love her for it.